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MAY AWARENESS MONTH 2022

Each year the global Huntington’s community unites during the month of May in a shared mission to raise awareness for the thousands of people affected by Huntington’s Disease.

Patients, caregivers, family members, and friends are organizing events and webinars worldwide, sharing stories about Huntington’s disease (HD) on social media and even lighting landmarks blue and purple.

Today begins #MayAwarenessMonth 2022! We want the HD community to raise their voice during this month, because we are STRONGER TOGETHER and we are every day TURNING HOPE INTO REALITY. 

FAMILIES ACCESS TO SUPPORT AND CARE

We have set up a survey to map whether HD patients and family members have access to support and care.  We hope family members, patients and professionals from all over Europe can take the time to help us and respond.  The survey is available in 20 languages. 

Let's get to 1000 people!
506 surveys done

NEWS

Webinar 🚴 The adventure of Dimitri Poffé

We want to close this year’s May Awareness Month in the best way possible, so we contacted Dimitri Poffé, a French Huntington Disease advocate who decided to make a trip by bike through Latin America in order to raise awareness for Huntington’s disease


Together we organized a Webinar 💻 on May 26th to talk about his journey and experience during these months. Join us to learn more about Dimitri’s decision of enjoying life to the fullest.

📆 Thursday 26th of May, from 18:00-19:00 CETSurvey available here in 26 languages

You can register here

Participate in the Moving Forward Forum!

📣 Your voice can make a difference in the HD community!
The Moving Forward team has created a Forum, an online platform with several interesting topics about Huntington’s Disease.
 
Visitors will be able to ask questions, share experiences and connect with others:
  • This is your moment to speak and be heard.
  • This is your moment to learn from others and benefit from their experience.
  • This is the moment to use your voice!
 
Please share your thoughts, experiences & comments about this and other HD topics.
 

💻 WEBINAR: “All you need to know about PROOF-HD” hosted by Prilenia

May Awareness Month will be kicked-off with updates from Michael Hayden, Andrew Feigin, Ralf Reilman and Anne Rosser about the Phase 3 trial where the drug Pridopidine is tested on HD patients. Close to 500 participants in North America and Europe are given either the active drug or placebo for more than one year.
 
The recruitment went fast and smooth and we can expect to have the first results published sometime first half of 2023. The speakers will tell us about the background and mechanisms of Pridopidine, status for the trial and potential next steps. What will happen if the trial demonstrates effect? What if it doesn’t?
 
🙌 Join us to learn more and discuss with the lead management of the trial! Dina de Sousa from EHA will take part in a panel discussion together with the speakers.
 
📆 Wednesday 4th of May. From 18:00-19:00 CET

Full Document here:

CONSENSUS STATEMENT

Improving access to care and treatment for Huntington’s Disease patients and families. Sign our petition

Let's get to 500 signs!
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